Results from hospital meeting

Dropped Grace off at Nannas house this morning at 9.30 and then made our way to the hospital for the meeting with Dr S and also Graces Community Nurse attending.

Generally things didn't sound good, but nothing more than we had expected to hear. The Dr had drawn up a list of Graces visits to clinic since diagnosis and compared this history up to date.

It would seem that since summer 2005 Grace has gradually worsened and definitely in the last 17 months things had taken quite a bad turn. He has eliminated most things such as aspergillus and cepacia, even TB! but decided that it is more than likely a very aggressive strain of pseudomonas aureginosa, which along with Graces make up, was something that she couldn't fight too well. He had made a list of her antibodies results since diagnosis and they read at 6 in March 2002 and currently at 29, going from 17 at the last visit to clinic and after having aggressive treatment,had gotten worse.

We thought that maybe he might suggest a bronchoscopy, but has opted for a CT scan first. Also my thoughts were that the down fall had coincided with the termination of azithromycin when she developed an allergy to it. It seemed to perk her up again with good results when she was on it previous to that time.

With that in mind they are going to try to re-introduce azithro and also start her on hypertonic saline whilst also giving the tobi nebs a few more months to get things moving.

Grace also has an appointment at BCH mid September, so Dr S is going to write to them ahead of our visit for their input as he feels that he should give all these things time to see if the damage is irreversible or irreparable, either way he said that he is very worried and said that he doesn't want to lie and say not to go away and not worry because they do have 'concerns'.

He mentioned how much faster her breathing had become of late and her lung function was getting lower and lower with each visit and he felt that it wasn't due to lack of technique. I mentioned at that time that sometimes we have to tell Grace to sit down and calm down as her heart is racing whilst she is trying to regain her breath, sometimes she just won't give in. This brought up the subject of overnight oxygen, to which he was happy not to give it to her just yet as her lethargic time was in the afternoons as opposed to the mornings, and he was happy for her to keep running around like a loony whilst she felt she was able. So generally, it was no more than we new already ourselves, and we are all hoping that it is just a sticky patch that will be turned around.

We truly are hoping that it will be turned around, I don't know what to think next if she just continues to plummet at such a rate. They asked us if we wanted to ask any more questions and to write them down if we thought of anything else, but what else is there to ask?

We wrote to the make a wish foundation to try and enlist their help for Grace to go to a music festival. She would have loved to go to Reading/Leeds, all of her favourites together. She loves the Klaxons, she knows all of the words to all of their songs and it would have been the only opportunity for her to see Fall out Boy in this country this year, but whilst they have accepted the request, the procedure takes quite a while to get moving and sadly it has gone past.

I kept reasoning with myself that we were awful frauds for wanting to use the foundation, but it was mainly because camping or queueing and the sanitary state of things and how to do meds etc would make it impossible for us to do it otherwise, and just wanted to enlist their help so that she could go but still have a bit of luxury.

It will never enter my head in future, that little girlie works so hard to stay well and keep up with everyone else, and also she said if the Foundation contact us now she doesn't want to do anything else....... think I might have let her down on that one a bit :(

Naughty Pusscat!!

Look what I discovered when I got up this morning! Tut tut!

Muchly updating

We have been away for another holiday. This time we decided to have a week in Devon. We have been so lucky with our chosen weeks this year (weather wise I mean)on both occasions we have had glorious weather.

Day one of our new kitchen looked not too bad.

The day before we left to go to Devon proved a little difficult to get up and down the garden to use the washing line, but I was glad to get away.

Upon returning from our holiday you can just see the progress??



Currently it is being filled with concrete, so we will have to walk around the block to get into the garden for a couple of days (can just see myself trekking around the neighbourhood with a basket full of smalls.

I haven't been to the gym or done any training since I had my fall. Firstly, the fall scared me slightly and my foot has swollen up again a few times,and secondly, Faye is in Turkey and whilst Mark is at work we haven't had anyone to take care of Grace. Except for yesterday afternoon whilst I left her with my Mum so that I could go to a funeral service, but even in that short time I think my Mum needed a lie down afterwards.

Hopefully I will be back to normal and back to my gym routine next week, and the couple of weeks break has definitely given my foot a much needed rest.

Grace is currently looking well, but lung function was rubbish at clinic yesterday, although her sats were up to 92% which was pleasing. She is currently less breathless but is producing much sputum. This could be due to lack of Dnase for a week, which she had to go without due to leaving my husband in charge of packing meds and a road I definitely don't want to go down.

Grace did lots of playing in the sea and racing (well struggling) up the steps to go down slides at the water park, but she never gave in a had a great time, in fact it took me a couple of days to recover after racing up and down with her!

We have a meeting with Dr S on Friday and he has requested that Grace is not with us so that we can discuss what they feel the next move might be due to the fact that after all of the intense treatment Grace has had and she still remains very symptomatic. She is also due in Birmingham in 3 weeks so that will probably prompt a letter to the team there.




Not quite the layout I had planned for, but it will have to do nevertheless. I am not too technical it would seem.

For Emily - I actually came into the world with a bang on Bonfire night lol! but I am not complaining as it means I still have a few weeks yet until I reach the ripe old age of 45. Thank you for remembering it, sort of, anyway, and Many Happy Returns to your sister xx

Slowly but surely

Everyone I speak to has said that. My foot will mend slowly but surely, the building work will come together slowly but surely. I want it to come together fast but definitely!

I have been going to the gym every other day, and have gradually built back up to 22 minutes running. I am still using the rowing machine and I have a challenge now. I have been trying to get under 4.5 minutes rowing a 1000 metres but I get very tired near the end and manage to put on a spurt to get there, I just need to be consistent. I have continued to do arms and abs and I seem to have lost a bit of weight. Maybe its because I haven't been able to work on muscley legs quite so much. Anyway I'm not complaining.

I tried a bit of a road run this morning, it was ok and I managed about 18 minutes which is much better than I thought, although my foot just 'gave' a bit at one stage and couldn't hold me and I ended up running at full speed into the floor, it was either that or take out an old lady walking towards me. So now I have a big hole in my knee, very actractive.

Building work is lovely, I have boulders, a trench (or moat) and we have had 3 skips already. I can't remember the builders names so we have called them Reg, Harry,Ron and Hagrid joined us today and he has no sugar in his tea.

Grace is doing ok, the eflow and tobi seemed to have dried her up considerably which is good.

We are going away this weekend for a few days and she is really looking forward to it.

Has it been that long?

Gosh! What a long time since I last posted. Not for any other reason except I've been busying about on holiday and out in the garden in the sunshine.

I now have cast removed from my foot, but its still a bit dodgey. It swells by the end of the day, but I have been to the gym twice this week and done around 10 minutes on the treadmill and then used the rowing machine to make up the cardio and done some floor work and a lot of swimming.

I did get advised by the Dr at the fracture clinic first ofcourse, and its coming along slowly.

Grace is still on cipro and due back in clinic on 28th of August. She is still getting pretty breathless and has gone back on tobi yesterday. She had a great time away and we are off again on Sunday for five days to Devon.

Tomorrow the builders are arriving to start the kitchen. Its going to take 10 weeks and we will be away for the 2nd week. The builder said we should have floors by the time we return. That sounds promising. So forgive me if I'm not around for another post for a while and hope you are all enjoying the long awaited summer.